What then does schizophrenia mean to me? It means fatigue and confusion, it means trying to separate every experience into the real and the unreal and not sometimes being aware of where the edges overlap. It means trying to think straight when there is a maze of experiences getting in the way, and when thoughts are continually being sucked out of your head so that you become embarrassed to speak at meetings. It means feeling sometimes that you are inside your head and visualising yourself walking over your brain, or watching another girl wearing your clothes and carrying out actions as you think them. It means knowing that you are continually “watched,” that you can never succeed in life because the laws are all against you and knowing that your ultimate destruction is never far away.
Patient with schizophrenia, quoted in Henry R. Rollin, Coping with Schizophrenia
When tragedy strikes, one of the things that make life bearable for people is the sympathy of friends and relatives. This can be seen, for example, in a natural disaster like a flood and with a chronic disease like cancer. Those closest to the person afflicted offer help, extend their sympathy, and generally provide important solace and support in the person’s time of need. “Sympathy,” said Emerson, “is a supporting atmosphere, and in it we unfold easily and well.” A prerequisite for sympathy is an ability to put oneself in the place of the person afflicted. One must be able to imagine oneself in a flood or getting cancer. Without this ability to put oneself in the place of the person afflicted, there can be abstract pity but not true sympathy.
Sympathy for those afflicted with schizophrenia is sparse because it is difficult to put oneself in the place of the sufferer. The whole disease process is mysterious, foreign, and frightening to most people. As noted by Roy Porter in A Social History of Madness, “strangeness has typically been the key feature in the fractured dialogues that go on, or the silences that intrude, between the ‘mad’ and the ‘sane.’ Madness is a foreign country.”
Schizophrenia, then, is not like a flood, where one can imagine all one’s possessions being washed away. Nor like a cancer, where one can imagine a slowly growing tumor, relentlessly spreading from organ to organ and squeezing life from your body. No, schizophrenia is madness. Those who are afflicted act bizarrely, say strange things, withdraw from us, and may even try to hurt us. They are no longer the same person—they are mad! We don’t understand why they say what they say and do what they do. We don’t understand the disease process. Rather than a steadily growing tumor, which we can understand, it is as if the person has lost control of his/her brain. How can we sympathize with a person who is possessed by unknown and unseen forces? How can we sympathize with a madman or a madwoman?
The paucity of sympathy for those with schizophrenia makes it that much more of a disaster. Being afflicted with the disease is bad enough by itself. Those of us who have not had this disease should ask ourselves, for example, how we would feel if our brain began playing tricks on us, if unseen voices shouted at us, if we lost the capacity to feel emotions, and if we lost the ability to reason logically. As one individual with schizophrenia noted: “My greatest fear is this brain of mine. . . . The worst thing imaginable is to be terrified of one’s own mind, the very matter that controls all that we are and all that we do and feel.” This would certainly be burden enough for any human being to have to bear. But what if, in addition to this, those closest to us began to avoid us or ignore us, to pretend that they didn’t hear our comments, to pretend that they didn’t notice what we did? How would we feel if those we most cared about were embarrassed by our behavior each day?
Because there is little understanding of schizophrenia, so there is little sympathy. For this reason it is the obligation of everyone with a relative or close friend with schizophrenia to learn as much as possible about what the disease is and what the afflicted person is experiencing. This is not merely an intellectual exercise or a way to satisfy one’s curiosity but rather the means to make it possible to sympathize with the person. For friends and relatives who want to be helpful, probably the most important thing to do is to learn about the inner workings of the brain of a person with schizophrenia. One mother wrote me after listening to her afflicted son’s descriptions of his hallucinations: “I saw into the visual hallucinations that plagued him and frankly, at times, it raised the hair on my neck. It also helped me to get outside of my tragedy and to realize how horrible it is for the person who is afflicted. I thank God for that painful wisdom. I am able to cope easier with all of this.”
With sympathy, schizophrenia is a personal tragedy. Without sympathy, it becomes a family calamity, for there is nothing to knit people together, no balm for the wounds. Understanding schizophrenia also helps demystify the disease and brings it from the realm of the occult to the daylight of reason. As we come to understand it, the face of madness slowly changes before us from one of terror to one of sadness. For the sufferer, this is a significant change.
The best way to learn what a person with schizophrenia experiences is to listen to someone with the disease. For this reason I have relied heavily upon patients’ own accounts in describing the signs and symptoms. There are some excellent descriptions scattered throughout English literature; the best of these are listed at the end of this chapter. By contrast one of the most widely read books, Hannah Green’s I Never Promised You a Rose Garden,
is not at all helpful, as is explained in Appendix A
. It describes a patient who, according to one analysis, should not even have been diagnosed with schizophrenia but rather with hysteria (now often referred to as somatization disorder).
When one listens to persons with schizophrenia describe what they are experiencing and observes their behavior, certain abnormalities can be noted:
- Alterations of the senses
- Inability to sort and interpret incoming sensations, and an inability therefore to respond appropriately
- Delusions and hallucinations
- Altered sense of self
- Changes in emotions
- Changes in movements
- Changes in behavior
- Decreased awareness of illness
No one symptom or sign is found in all individuals; rather, the final diagnosis rests upon the total symptom picture. Some people have much more of one kind of symptom, other people another. Conversely, there is no single symptom or sign of schizophrenia that is found exclusively in that disease. All symptoms and signs can be found at least occasionally in other diseases of the brain, such as brain tumors and temporal lobe epilepsy.
In Edgar Allan Poe’s “The Tell-Tale Heart” (1843), the main character, clearly lapsing into a schizophrenia-like state, exclaims to the reader, “Have I not told you that what you mistake for madness is but overacuteness of the senses?” An expert on the dark recesses of the human mind, Poe put his finger directly on a central theme of madness. Alterations of the senses are especially prominent in the early stages of breakdown in individuals with schizophrenia and can be found, according to one study, in almost two-thirds of all patients. As the authors of the study conclude: “Perceptual dysfunction is the most invariant feature of the early stage of schizophrenia.” It can be elicited from patients most commonly when they have recovered from a psychotic episode; rarely can patients who are acutely or chronically psychotic describe these changes.
Alterations of the senses as a hallmark of schizophrenia were also noted by Poe’s professional contemporaries. In 1862 the director of the Illinois State Hospital for the Insane wrote that insanity “either entirely reverses or essentially changes the mind in its manner of receiving impressions.” The alterations may be either enhancement (more common) or blunting; all sensory modalities may be affected. For example, Poe’s protagonist was experiencing predominantly an increased acuteness of hearing:
True!—nervous—very, very dreadfully nervous I had been and am! But why will you say that I am mad? The disease had sharpened my senses—not destroyed—not dulled them. Above all was the sense of hearing acute. I heard all things in the heaven and in the earth. I heard many things in hell. How, then, am I mad? Harken! and observe how healthily—how calmly—I can tell you the whole story.
Another described it this way:
During the last while back I have noticed that noises all seem to be louder to me than they were before. It’s as if someone had turned up the volume. . . . I notice it most with background noises—you know what I mean, noises that are always around but you don’t notice them.
Visual perceptual changes are even more common than auditory changes. One patient described it as follows:
Colours seem to be brighter now, almost as if they are luminous paintings. I’m not sure if things are solid until I touch them. I seem to be noticing colours more than before, although I am not artistically minded. . . . Not only the colour of things fascinates me but all sorts of little things, like markings in the surface, pick up my attention too.
And another noted both the sharpness of colors as well as the transformation of objects:
Everything looked vibrant, especially red; people took on a devilish look, with black outlines and white shining eyes; all sorts of objects—chairs, buildings, obstacles—took on a life of their own; they seemed to make threatening gestures, to have an animistic outlook.
In some instances the visual alterations improved the appearance:
Lots of things seemed psychedelic; they shone. I was working in a restaurant and it looked more first class than it really was.
In other cases the alterations made the object ugly or frightening:
People looked deformed, as if they had had plastic surgery, or were wearing makeup with different bone structure.
Colors and textures may blend into each other:
I saw everything very bright and rich and pure like the thinnest line possible. Or a shiny smoothness like water but solid. After a while things got rough and shadowed again.
Sometimes both hearing and visual sensations are increased, as happened to this young woman:
These crises, far from abating, seemed rather to increase. One day, while I was in the principal’s office, suddenly the room became enormous. . . . Profound dread overwhelmed me, and as though lost, I looked around desperately for help. I heard people talking, but I did not grasp the meaning of the words. The voices were metallic, without warmth or color. From time to time, a word detached itself from the rest. It repeated itself over and over in my head, absurd, as though cut off by a knife.
Closely related to the overacuteness of the senses is the flooding of the senses with stimuli. It is not only that the senses become more sharply attuned but that they see and hear everything. Normally our brain screens out most incoming sights and sounds, allowing us to concentrate on whatever we choose. This screening mechanism appears to become impaired in many persons with schizophrenia, releasing a veritable flood of sensory stimuli into the brain simultaneously.
This is one person’s description of flooding of the senses with auditory stimuli:
Everything seems to grip my attention although I am not particularly interested in anything. I am speaking to you just now, but I can hear noises going on next door and in the corridor. I find it difficult to shut these out, and it makes it more difficult for me to concentrate on what I am saying to you.
And with visual stimuli:
Occasionally during subsequent periods of disturbance there was some distortion of vision and some degree of hallucination. On several occasions my eyes became markedly oversensitive to light. Ordinary colors appeared to be much too bright, and sunlight seemed dazzling in intensity. When this happened, ordinary reading was impossible, and print seemed excessively black.
Frequently these two things happen together:
My focus was a bit bizarre. I could do portraits of people who were walking down the street. I remembered license numbers of cars we were following into Vancouver. We paid $3.57 for gas. The air machine made eighteen dings while we were there.
An outsider may see only someone “out of touch with reality.” In fact we are experiencing so many realities that it is often confusing and sometimes totally overwhelming.
As these examples make clear, it is difficult to concentrate or pay attention when so much sensory data are rushing through the brain. In one study more than half the people who had had schizophrenia recalled impairments in attention and in keeping track of time. One patient expressed it as follows:
Sometimes when people speak to me my head is overloaded. It’s too much to hold at once. It goes out as quick as it goes in. It makes you forget what you just heard because you can’t get hearing it long enough. It’s just words in the air unless you can figure it out from their faces.
Because of this sensory overload, it is often difficult for individuals with schizophrenia to socialize. As one young man noted:
Social situations were almost impossible to manage. I always came across as aloof, anxious, nervous, or just plain weird, picking up on inane snippets of conversation and asking people to repeat themselves and tell me what they were referring to.
Sensory modalities other than hearing and vision may also be affected in schizophrenia. Mary Barnes in her autobiographical account of “a journey through madness” recalled how “it was terrible to be touched. . . . Once a nurse tried to cut my nails. The touch was such that I tried to bite her.” A medical student with schizophrenia remembered that “touching any patient made me feel that I was being electrocuted.” Another patient described the horror of feeling a rat in his throat and tasting the “decay in my mouth as its body disintegrated inside me.” Increased sensitivity of the genitalia is occasionally found, explained by one patient as “a genital sexual irritation from which there was no peace and no relief.” I once took care of a young man with such a sensation who became convinced that his penis was turning black. He countered this delusional fear by insisting that doctors—or anyone within sight—examine him every five minutes to reassure him. His hospitalization was precipitated by his having gone into the local post office where a girlfriend worked and asking her to examine him in front of the customers.
Another aspect of the overacuteness of the senses is a flooding of the mind with thoughts. It is as if the brain is being bombarded both with external stimuli (e.g., sounds and sights) and with internal stimuli as well (thoughts, memories). One psychiatrist who has studied this area extensively claims that we have not been as aware of the internal stimuli in persons with schizophrenia as we should be:
My trouble is that I’ve got too many thoughts. You might think about something, let’s say that ashtray, and just think, oh! yes, that’s for putting my cigarette in, but I would think of it and then I would think of a dozen different things connected with it at the same time.
My concentration is very poor. I jump from one thing to another. If I am talking to someone they only need to cross their legs or scratch their heads and I am distracted and forget what I was saying. I think I could concentrate better with my eyes shut.
And this person describes the flooding of memories from the past:
Childhood feelings began to come back as symbols, and bits from past conversations went through my head. . . . I began to think I was hypnotized so that I would remember what had happened in the first four and a half years of my life.
Perhaps it is this increased ability of some patients to recall childhood events that in the past mistakenly led psychoanalysts to assume that the recalled events were somehow causally related to the schizophrenia. There is no scientific evidence to support such theories, however, and much evidence to support...